Karly’s precious little hands. She was so determined to share her thoughts with us, then eventually the world after we found a way for her to communicate at age 10.

As Karly’s health declined, she asked me to post this poem she wrote, after she passed. Her beautiful heart and spirit continued to guide us right to the end of her days. She leaves behind an enormous hole in our hearts and lives.

It has been a wonderful week for me! Many wonderful gifts have come into my life and I am so thankful today. The medication finally stopped tormenting me and I am feeling more like myself. I’m not interested in medication unless it’s absolutely necessary again, so my gratitude is that we tried it, found out what happened and were able to get off of it.

I was writing a lot last week. I had many opportunities come to me that I wasn’t expecting. One of them was to be a chapel speaker at Teen Challenge. I can choose the date so I asked for one after Christmas. I worked on my talk for about six hours so far and it feels really good. It’s a miracle that I am able to share anything at all and I feel so fortunate, truly fortunate to be given an opportunity to share for up to 50 minutes. It will be in front of 150 people. Their director, Steve, said that my story is very inspiring especially to people who have some really hard times. I feel so blessed to be seen as someone who has a message to share!

I was also given the opportunity to write for a horse magazine called Apples ‘n Oats. I will be writing for the Spring edition, but their winter edition has my favorite photo from riding this summer with a brief message from me. It’s so beautiful. It will be an entire page of their magazine, so I feel very happy about that too. applesnoats

This is the photo in Apples n' Oats. My Mom took it while I was riding in November.

I was contacted because my song Ever After was used in a meditation CD for caregivers. I think it sounds like a beautiful way for people who provide all kinds of care to others others, be provided and cared for too. Creative Health Care Management

I wrote a poem for my new friends at Bible Study, but it’s a poem for everyone in my life who has become dear to me. That is many people this year. I feel forever changed and so much love.

When Time Stood Still

Karly Wahlin

I saw my life stretching before me,

longing for connection with others

reaching for a hand so elusive

asking questions not heard

I saw the awkward glances in my direction

hoping they wouldn’t expect

more than I could give

I begged God for someone who

knew with their heart

someone who saw with their kind eye

who gave generously of their friendship

seeing my contributions as enough

Hope restored is a powerful thing

giving strength where there was isolation

bringing friends into a circle warmed by

the fire of unity

I found you!

I have been blessed.

My favorite photo of me and Beau

My dear friend Laurie, and Chester. They have blessed me with some of my favorite moments.

This is where I wrote this today. Beau was very curious about all the equipment.

While I type my Mom reads my words into the recorder then she types them into my computer.

I wrote this today for a group of parents who have daughters with Rett Syndrome. It might help some people so we are going to post it on my blog.

My Mom has told me about this new group and that I could introduce myself when I was ready. Today is a good day and I am ready to tell you of my story. I hope that it helps you dream big dreams for your daughters who have Rett Syndrome. I am 26 years old. For most of my first 12 years we had never met anyone else who was like me. I didn’t understand what had happened to my body. It was a very hard life for many years. I suffered a lot of pain and I wasn’t given opportunities at school to show who I am inside. I lived with no way to communicate my needs or thoughts for 10 years. I was trying to tell my Mom and others around me that I was in here and wanted to be understood, but I couldn’t communicate that without extra help. I gave so much of my energy at that time. I was sad and scared and I cried a lot.

Since we had no idea about Rett Syndrome my Mom just kept trying everything she could think of. We read many books together with my sister who loves to read. We listened to books on tape, we listened to the radio and while my Mom played piano I sat on her lap and watched the keys. I loved music. We did this everyday until I was too big for my Mom to play around anymore. I haven’t had an easy life, but I have been surrounded by lots of love. My parents and sister are very musical and I was surrounded by many different kinds of music. I didn’t get much hope when I was in school but I got hope from my family. My mom believed in me and kept trying so many things to help me with my health and with my intelligence and with communication.

When I was 10 years old my Mom and I read about a man who lived in an institution most of his life. We read it together and I remember sitting so close to the words and watching my mom read the mans story and how he was able as an adult at 36 years old, to begin typing. His family gave him a chance and he was able to leave the institution. He even wrote a book. He needed help with his arm to type, because he couldn’t control much of his movements. But with the right kind of help, he showed that he was very intelligent and just waiting for someone to find out. I loved every word from his story!

My Mom didn’t know at that time that I had taught myself how to read by sitting on her lap and looking at the words as she read for so many years, and I figured out how to spell most words. So by the time I was given a typewriter, by a woman who believed in people like me, I could type words. I typed very slow. Many times I couldn’t type no matter how hard I tried because of my movements that I couldn’t control. But today, if you see me typing, you will see that I type very fast. I have been so fortunate. Much of my life has changed so much. I still struggle everyday with Rett Syndrome. There are times I can’t feed myself, times when hyperventilation and breath holding make my days really hard, times when seizures stop me, times when I have terrible headaches, or frustration I can’t control and anxiety that makes me feel crazy inside. Nights when I can’t sleep. Days when I can’t stop chewing, but with all of this I have a blessed life. I have a life that has great times in it. I am a speaker at times. I have written for a magazine. I have my own CD of music I have composed for piano. I am sitting here today with my miniature horse sleeping by my wheelchair. I have wonderful caregivers in my life, who have given me opportunities, because of their care for my body to be as healthy as I can be. I give them lots of credit because my family needs lots of help to care for me.

So today I hope you hear my story and are inspired to believe in your daughters. Because if you do, they will show you who they are and what they are able to do. Don’t believe that the tests are a good indicator of their intellect because the tests I was given in school show that I am profoundly mentally impaired. It’s not true and those tests caused me much trouble in my life. I can’t show you my intellect but if you believe that I have it, you will change most of all because you will try many things to help me become the best person I can be. That was my Mom’s belief and it worked for us. I have not forgotten everyday the sacrifices and struggles we have had.

Please don’t let Rett Syndrome be the only thing that is said of your daughter. It’s part of who I am but it’s not all that I am.

Love, Karly

I was so glad to meet Susan Norwell when she came to my house

January 2010:
I asked Susan Norwell if she would be willing to write something for me to put on my blogpage. She has worked for many years with people who are challenged with communication. I had a great visit with her last Fall. She and I have written to each other by email since then. I am excited that she believes in Rett girls. We need people like her to believe in our intellect and not get stuck on our inability to express ourselves easily.
Love, Karly
Dear Karly Bloggers,
I have been working with girls/women with Rett for almost 30 years. They have all taught be so much, that I wish I could go back and help those first two babies I worked with in 1980. I would have a lot more to offer them now. What I have learned, most importantly, is that Rett is definitely a motor disorder and the motor deficits that are affecting cognition is what we should be concerned about. Instead, professionals dwell on the “apparent” cognitive deficit (evidenced by the lack of motor response) and tremendously undershoot these girls.
I have lost count of the number of girls I have worked with, but this I know for sure….they are cognitively more capable than they are able to express and it is the lack of skill on our part that most hinders their development. So when I was asked to visit Karly to witness this young lady who was able to ‘Blog” and create music using FC, I was delighted and looking forward to learning something new from her.
For years I have utilized Facilitated Communication with my students with autism. I was trained by the original Biklen, Syracuse crew back in the early 90’s. I work hard to decrease support as soon as possible and many of my students have “proved” the typing is theirs by reporting experiences I did not partake in and by continuing to provide correct answers even after I shield myself from their choices. I never want to influence a student as that would be a dishonest portrayal of their abilities and would be unfair to all involved. I currently use FC with a young woman with Rett, who types more slowly than Karly, but clearly expresses her ideas and intentions using an AAC device called the tango!
Karly communicated via a keyboard facilitated by her mom. She was able to answer my questions and make appropriate comments throughout our visit. Her communication would sometimes halt as she lost the motor plan. In my professional opinion, this proved to validate her communication as those stops are consistent with the disorder. Karly had wonderful insights, a great sense of humor and spoke in a manner that is more like writing than typical speech. This is again something I have noticed with other students who use FC. They typically don’t use the slang we all do and are more precise in their communication, which is more similar to how we communicate in writing.
Karly is very blessed to have a mom that believes in her and others who support her communication and creation. There are so many girls who are not this fortunate and are still trapped by others’ low expectations. Please don’t leave any method, style or type of communication untried. We owe it to our “girls.”
Susan Norwell M.A.
Educational Specialist (Rett, Autism

I love horses! I have since I was able to meet my first one when I was very little. I feel their energy. My Mom and I go to horse shows and I sit real close to the fence so I can see the horses and see how they are doing. Sometimes horses have even stopped to connect with me. I always love that, but their riders get concerned.

Beau and I in his barn

Horses have brought me a lot of joy. We have great friends who have been so kind to us. They have a therapeutic riding farm and invite me to come and ride at their farm as a friend. When I was younger I was in a program and signed up to go every week but as I got older and my energy and health were not consistent, it was harder for me to go every week. So Bill and Laurie, have been so thoughtful and invite me to come when I am able. I feel so fortunate and I love their farm. It feels like heaven to me! I ride Chester who is a Fox Trotter and a very strong horse. They also help us by bringing Beau hay throughout the year since we got him six years ago. Many people have blessed us by offering to help care for him. I feel so glad that he is near me and we get to see each other outside when it is nice and inside when it’s not.

Amy and her sister Heidi were my sidewalkers

Laurie is a great friend to us.

My favorite place on earth!

Some great friends of mine.

My heart is content when I am with horses and I feel much peace. I got to ride this week. I still feel the joy from that. I hope you enjoy these pictures as much as I enjoyed my time.

I’m eager to show you something. Yesterday when I wasn’t feeling good because I had a seizure during the night I asked my Mom to go to the paddock with Beau. It was so good for me because I feel so much better when I am with him. He can sense when I am in pain and when we got into the paddock he smelled me all over and then stood very close and wrapped his neck around my legs. I felt so loved by him. He is able to connect with me. His comfort makes me feel better. I like having him in our back yard so we can be together whenever we can. He is seven now, and is so relaxed.

This is when we first got in the paddock

He smelled me all over because he can sense when I'm in pain.

He wrapped his head around my legs and stayed that way for a long time.